A few nights ago was my kids' open house at school. I only took three of the kids because the others wanted to stay home with Daddy and swim. Of course Sveta and Julia both chose to stay home with their fun Dad. They just love swimming! As I walked into Sveta's 4th grade classroom all of the mission projects done by the students were nicely on display on each of the children's desks. Immediately I saw Sveta's Mission San Rafael Arcangel. It made me smile. While it was definitely not "the best" in the class, I know that she was very proud of it which is why I smiled.
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Yesterday, I attended Sveta's IEP. This was a big one because she had her three year evaluation. I was excited to find out what the test scores would reveal and was able to get the reports a day before the meeting so that I would be prepared for it. Earlier in the month, I had filled out a questionnaire about her adaptive life skills and was pleasantly surprised to see that her teacher scored her right around the same. In the past at our old school, it had always felt like it was John and I trying to prove that our daughter needed services---- the school's reports always seemed to be scored opposite of what we felt our daughter's capabilities were. It had always made IEP meetings very uncomfortable--- but not this time. Yesterday's meeting was very nice.
Sveta scored moderately low on expressive language, but her receptive language had gone up considerably. She scored quite low on many of the tests which of course made her continue to be eligible for special services, but it was apparent that she had made growth since her evaluation three years ago. She actually has learning to tell time and count money as part of her goals for next year----- things I had only dreamed of her doing.
Her handwriting has improved greatly, as has most of the other areas that once qualified her for occupational services. It was determined at this meeting that Sveta no longer needed occupational therapy, but I was pleased that the therapist gave me her phone number in case I ever had questions or concerns. Sveta was also administered "The Wechsler Intelligence Scale for Children - Fourth Edition (WISC–IV), where her overall Full Scale score (IQ) was 56. Had I not been prepared to hear that, it would have been very discouraging since that is considered mildy mentally retarded. But the school still feels that language is still a barrier and that her score will most likely go up in the next three years. Honestly though, the research I have done says otherwise, and so I have learned to be happy and enjoy Sveta with where she is at and if she shows more progress during her next evaluation then wooo-hooo. If not, it doesn't matter. Regardless, she is who she is, and we love her no matter what.
So why do I share this? Because Sveta has Fetal Alcohol Syndrome and for many adoptive parents, that is one of the things they fear most about adoption. Well I am here to say, don't fear it! Sveta may very well trail behind her classmates, but she also has shown tremendous growth in areas I wasn't sure was possible. So much of what I read is so darn negative about FAS, and frankly I am tired of it. She continues to surprise us with new things everyday---- and it makes me take nothing for granted. When she takes on double digit multiplication, I cheer her on----- unlike my ho-hum expectations that my other children just need to hurry up and learn it and get it done. It is refreshing.
More than just her academic ability, I do feel it is important to "protect" Sveta. All children with special needs are vulnerable to being teased and bullied. Not that all children don't have the potential to be bullied--- but children with special needs are not even aware most of the time that they are being made fun of--- and that bothers me. I am extra sensitive to this and want to make sure that the school stays on top of all situations that arise-- because Sveta herself can instigate a child unknowingly and make them mad. This is something that I struggle with more than her academics-- because the world can be a cruel place. To help avoid run ins with bullies, I have instructed Sveta not to stare or say things that others may not think are very nice. Telling a classmate that her shoes look old and dirty may very well be a truthful statement but one that would not be well received. Sveta doesn't quite yet understand this and has made a few girls upset. Thankfully for her sisters, they have been able to not only diffuse the situation, but they have been able to take Sveta under their wings to make sure she stays away from trouble.
I could not imagine life without my Sveta. She makes the world a livelier place. If you ever have questions about FAS, please feel free to ask.
19 inspiring thoughts:
Christine,
I have enjoyed getting caught up on your blog. Those are some great reports you have heard about Sveta. The time I have spent with her has been great. She is very unique in a great way! I'm sure she is a blessing to your home. I'm so glad that you and John can help her and give her the best opprotunities. I know God has great plans for all your kids!
Hi! I wouldn't put too much stock in the intelligence test. On that particular test, I have scored from 102 to 135 in IQ. My brother though, really demonstrates how inaccurate it can be. He has severe learning disabilities since childhood and severe expressive language problems. At 5 years old, they tested his IQ in the 60's. In sixth grade, they tested it in the 80's. High School-- in the 100's. In his 30's, he was having difficulties in college. They retested him with an IQ of 132 (near genius). So don't put too much thought into these tests!!!
Basically, they are used to classify children into some category, so they can get the funding. They really don't guide a teacher or parent or therapist on what is beneficial to the child. The child might just not be good at taking the test. Functional skills are so much more important.
It's sad that money is behind giving parents news like low IQ scores. The school's funding and therapy services are based on how much the kids improve on these tests, when it should be on their actual improvement in abilities that should count. And don't get me started on testing with the No Child Left Behind Act with children with learning disabilities... Giving a "normal" test, say to a 5th grader (written at a 5th grade reading level), who because of a disability may only have a 2nd grade reading level, is just plain cruel and unnecessarily frustrating for a disabled child. They are being set up to feel like a failure, when they should be judged individually by their accomplishments. Okay...off my soapbox... Take care...
I want to get in touch with you about Sveta's scarves and my little project I have going on...Not quite ready to make a proposal yet, but we want to make her little business proposition!
Great post about FAS!Im eager to hear stories about kids with FAS and how the family and everyone copes.
Far out! Have Sveta and Julia suddenly turned into identical twins?! They look SO alike in that photo! :O
I have a six year old brother who has FAS. Our biggest issue is behavioral: screaming, lying, hitting, self harming, destroying anything and everything, and fire setting. We love him more than anything in the world and take it each day at a time, but I'm wondering if you have these issues with Sveta? From what I've read it's mostly been IQ concerns and social interaction, which is wonderful, but I would love to hear if you have any of the other issues and how you deal with them
♥ that's great that you guys are seeing improvment! Very cute picture! :)
Thank you for sharing about your dear Sveta. She is doing so well, and I know you are pleased. :-)
Wow, do your girls ever look alike in that photo! :) Both beautiful young ladies.
From what you`ve written before about Sveta, she sounds like such a sweetie, always helping. I think a lot of people think that children who have FAS or other problems must be difficult, but some of the most amazing people I`ve met are those that others would consider retarded. They have a unique perspective on life and are often such wonderful human beings . . . we could all learn from them!
Im curious about the comment that language was still a barrier to IQ testing. When was Sveta adopted? Also, was her performance or nonverbal IQ higher than her verbal IQ? Finally was her adaptive skills and academic skills in line with her IQ?
My sister has mild MR and functions largely independently. She learned all the skills she needed by rote and she does not problem solve well- she doesnt do well with curve balls. However, she has learned to recognize situations that are difficult or new and to get help- best coping skill she could have learned! She also attended a specvial education program within a vocational high school which was invaluable for teaching the skills she needed to work and live in the world.
She was also adopted internationally and the school system really dragged its feet to provide services because they thought she needed more time in the US. Glad Sveta is receiving the help she needs- now.
Christine,
I am so happy to hear about Sveta's progress. I sure do miss my run ins with her here at the school. (when I was picking up my kids or just being on campus) When she smiles that big beautiful smile she has, it just makes my heart melt. She is always so curious and helpful to anyone who in need. You are doing a great job.
Tanya Jones
I also would like to know if you have seen behavioral problems with FAS. Our son's lack of impulse control is the most difficult aspect of dealing with his FAS. Learning delays and immaturity are easily dealt with. His lack of control over his impulses is very, very hard. If you've experienced this what has worked best for you to improve in this area?
Sharon
What a sweet post about Sveta. God does have a plan for her, and I'm so glad that she is being given a chance with you guys.
Looks like she and Julia got a little sun on their cheeks. :)
Great post Christine! I'm with you on the overly negative things reported about FAS.
Yes, things are different, yes they can be frustrating at times, but the outlook isn't all bleak! It can be darned good! :)
Congrats on Sveta's progress.:)
Love the picture.
Beautifully written! Sveta is one beautiful girl in so many ways. I can see her innocent joy in her eyes and I love the way you present her. All children are a blessing regardless of their needs or conditions.
YAY for Sveta!
Christine - what a beautiful post. What a special girl Sveta is, and how wonderful that God has given her to you and John to parent.
It's funny how some things are the same in Australia as America - I have to go to IEPs for my child with special needs, and at our last school, they were AWFUL!!!! ( I was told that I had too many children, and was too young to look after them properly - although they didn't know my age...and at that time I only had four!). Our new school, like Sveta's is much much better.
Thanks for writing such a lovely, encouraging post. I love my boy with SN, and am very wary of the high incidences of bullying here too for such children. I often pray about it, and am in many ways more protective of him than the others, in that regard.
He asked me the other day why God made him different (with tears, he was so sad about it), and I could honestly say to him that I love him just the way God has made him. He is a beautiful, wonderful gift and I am daily thankful for him.
The part about her IQ score going up in three years' time might very well be the case, as Wechsler is one part non-verbal reasoning and one part verbal. That can be always tricky with children, who are being tested in a language other than their first language, especially as some expressive langugae skills are needed.
Another thing about Wechsler is that it's pretty accurate and gives a pretty good inteligence profile: strong and weak areas, etc but it is not a learning ability test (Hiskey-Nebraska is a good one among those). Another thing is that with age the IQ changes in relation to the average of a certain age group, however, the average is not updated very often to reflect the current population.
It is nice to hear such positive news about another child with FASD. Our son Seth, just turned 13, is still settling into secondary school, so I can't quite tell his progress yet. But despite his learning problems he is a sweet likable boy with many friends and is a joy to our family. I would never discourage anyone adopting through fear of a child being alcohol effected - just make sure you go in with your eyes wide open and a willingness to advocate for your child.
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